mandymorena

Axel had been doing great. We hadn't had any big things happen. He started scooting everywhere. Now we don't have to pick him up and carry him to every room we go to. He scoots on his own there. If he starts crying wanting me he cries and scoots to where i'm at. So independent on, but getting into everything. Every new stain on the carpet is all Axel's doing. I don't mind. He starting to get fussy every time we put him in the carseat. He knows lots of things are happening out side and he can't see them. But until he can gain just a few more pounds we can turn the car seat around.
A little over a week ago, He had a absess on his right buttocks. It kept him from crawling so we had to be hospitalized and stay over night to have it lanced. Another mini surgery under his belt. Pulmonary said he's doing great and we have cut down his viagra to 3 times a day and in 2 weeks to 2 times a day. Hoping to completely get him off it soon.
It's seems this new year has brought lots of Appointments. Fifteen in January alone. Cardiology said he's doing great. Still has a whole between his right and left pumping chamber but that it was fine. Sent him home on no restrictions and we don't go back till next year. GI is still worried about his slow almost no weight gain. Trying to try some new thing going to see how they work and we go back next month. He going this week for some fitting for some SMO. to Help him with his hyper mobility. He should be in gymnastics lol. Also getting a Chest CT this week to see his right upper lobe of his right lung. It seems it just didn't develop. We've tried everything to open it but nothing has worked. We even have a follow up with genetics. I'm very excited to go and see what they have to say. He has an extra piece on his 17th chromosome. I've tried to research it but there is nothing out there. The last time the genetics doctor told me I wouldn't find anything it's so rare. But thats Axel for you always coming out with the rarest and none heard of things.
So many things to do sometimes i sit back and look at my calender and go "wow who does all this?" But i remember it was worse in the nicu. At least after these appointments I can bring him home with me. This week Axel has an appointment everyday.
God is blessing me and keeping my eldest son in great help. He hasn't needed to go to the doctor once in almost 5 months. He starts school in August and He's so ready. I know he's tired of being here all day with mommy and Axel. Locked up not being able to play with any kids. Germs Germs Germs I tell him. We can't have other kids germs in the house. He just says "OK Momma" and goes back to playing in his computer. Thank goodness for Sprout Disney Jr., and Nick Jr. online. Keeps him sane and busy.
Hoping everyone is doing great. We sure are. GOD IS GREAT!!!